Information-station

 

Last week we celebrated Malakai’s fifth birthday, which was a resounding success I must say! By success I mean that he felt loved, appreciated and validated on his special day – of course he enjoyed unwrapping his presents, but his face just lit the room up when we sang happy birthday to him first thing in the morning, and again at school, and again that night with family. My heart just swelled when I saw his pure joy – what a good day!

Malakai’s birthday is always a little bitter-sweet for me because it was also a day of total anguish. Instead of enjoying our little baby boy, we were enveloped in a sense of utter devastation when we received his diagnosis. I have never cried so much, and they were certainly not happy tears; although now I wish they had been.

I clearly remember that the only thing I knew about Down syndrome when Malakai was born was that people with Down syndrome apparently couldn’t pretend (which is a total fallacy by the way). Odd ‘fact’ really… Oh, and I knew it was a terribly bad thing, that my baby was somehow ‘broken’, and I was probably the one who had broken him.

Oh how little I knew then… and oh how lucky I was that a voice (eerie… yes) spoke to me in the days following Malakai’s arrival; a voice that told me that it was simply nuts that a blood test could tell me who my child was going to be. Only he could tell me that!

So it was rather fitting that the day before Malakai’s fifth birthday last week I was sent a press release about a new prenatal test for Down syndrome that is incredibly accurate and can be done at 10 weeks – so early that a termination could be done without any pain or any fuss…

Now don’t get me started on my views on ‘medical termination’ – they’re obviously very biased, and for good reason, I’ve lived it and I know much more than any medical professional. I know about the Real Deal of life with Down syndrome, while they know only cold medical facts, statistics and beliefs that a person’s blood can predict their future.

No, I am not going to talk about medical termination… and how everyone will feel one day when they’ll be able to prenatally diagnose autism or depression or alcoholism or bad breath or propensities to job hop… because that day will come… and then what? Should we just get rid of those pesky little problems as well?

And I am not going to get all emotional and talk about how this impacts me as a mother of a child with Down syndrome… and how I am frankly pissed off and terribly saddened that the world out there is getting so excited about a way to get rid of children like my own in quicker and more effective ways.

I am also not going to talk about being Pro-Life, because I truly don’t consider myself to be in that category either.

What I am going to talk about is Pro-Information.

I simply want to see couples making informed decisions based on accurate and up to date information. I can almost guarantee that once a positive diagnosis is received with this new wonder-test the couple will be surrounded by a bunch of doctors and geneticists and given a list of what is wrong with their broken baby. I don’t believe the parents are ever put in touch with a real family who live a real life filled with real love, real joy, real accomplishments and real proof that a life with Down syndrome is worth living.

If I imagine how little I knew of Down syndrome when Malakai was born I can thank my lucky stars he was a little beautiful and cherubic baby lying in my arms full of expectations of love. When I was told all the things that could be wrong with him, I was given the benefit of touching his soft skin, breathing-in his new baby smell, peering deeply into his startling blue eyes, and of course the voice that spoke to me… What about a couple who have no real connection to a 10 week old foetus? What about them? They have nothing to hold on to…

And so what, you may ask?

Well, this kind of new test has been available in the USA for some time and Down syndrome support groups who in the past would welcome between 8-10 new families a month are now opening their arms to only 1-2 families. There has been a 90% drop in the number of babies born with Down syndrome in some areas, which can only mean one thing – we can thank modern medicine for finally finding a quick and effective way of exterminating a whole group of people. And why? Because they can.

And here I thought the eugenics movement had been relegated to the history archives alongside Hitler’s master race, mass forced institutionalisations and sterilisations. But now, it is alive and well and being dished out without the most important ingredient – the information required to make an informed decision.

I believe that if given the chance to really see the truth of life with Down syndrome, someone somewhere would choose differently. They would choose the road less travelled, they would embrace a new way of seeing the world, they would relish as I have in cutting out all the bullshit of competition and expectations in favour of just being. Being loved. Being happy. Being real.

“Oh, I really wouldn’t like a child who gives the best hugs, loves unconditionally, says please and thank you with real sincerity, shares with abandon, dances everyday like no one is watching, makes friends, changes people’s mind sets, and is generally a child that I am so proud of that my heart could explode…” said no one ever.

 

*Disclaimer: I am not for one minute saying that raising a child with Down syndrome is simple or easy or all roses and sunsets – but the same is true for any child. I know, I have a typical child and a special needs child and they both challenge me as much as they give me utter joy and delight. What I am saying is that my children are worth it – both of them.